News from Aotearoa/New Zealand and the Pacific Islands

Tom Kindlon · Sep 6, 2022

https://www.facebook.com/TomKindlon...38byAwoJ5mZbD7NZayDFiipxFbnWMuVvRcgfxkWnZxZUl
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https://twitter.com/user/status/1567153105472479233

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rvallee · Sep 6, 2022

Dr Lynette Hodges said: ↑

Post-exertional malaise(PEM) suffered by individuals can last anywhere from 5-20 days
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And a house is definitely at least $1,000.

RoseE · Sep 6, 2022

23 'COVID-19 and National Immunisation Programme research projects' have been funded by the "Ministry of Health to undertake research into the ongoing impacts of COVID-19 and future pandemic responses. The research projects will show how whānau, communities and the health system responded to the COVID-19 pandemic and vaccine rollout, and provide insights into things such as long COVID, childhood immunisation and the pandemic’s overall impacts. This will be used to inform future planning."

"The projects were funded following a Request for Proposal published in April 2022, which attracted 75 proposals. The selection process involved staff from the Ministry of Health, the National Public Health Service and Whaikaha Ministry of Disabled Peoples. Each project was allocated funding of between $200,000 and $500,000. Funding comes from the COVID-19 health system response and the National Immunisation Programme."

Note: biomedical projects were not eligible.

COVID-19 and National Immunisation Programme research projects | Ministry of Health NZ

Two of particular interest...

LOGIC study: LOnG term health Impact of Covid-19: Waikato Hospital Cohort
Understanding of the incidence, duration, severity, and risk factors for Post-COVID Syndrome and other mental and physical health problems and disability after admission to hospital with COVID-19 during the Omicron outbreak, and assessment of the healthcare requirements, costs, and personal impact of these outcomes.

Principal Investigator: Dr Cat Chang, Te Whatu Ora Health New Zealand
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The Burden of Long Covid in Aotearoa New Zealand: Establishing a Registry
Establishing a Long COVID registry, estimating the clinical, quality of life and economic impacts of Long COVID in Aotearoa New Zealand, and providing a means to continually monitor health outcomes and inequities.

Principal Investigator: Professor Paula Lorgelly, University of Auckland Waipapa Taumata Rau
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Jenene Crossan, leading Long Covid advocate here in NZ, is collaborator on this research project.

RoseE · Sep 6, 2022

Not sure if this has been posted...
https://www.health.govt.nz/news-media/news-items/long-covid-be-tracked-help-new-coding

Clinicians around the country are being given the tools to record people diagnosed with long COVID, which will help provide a clearer picture of the impact of the condition over time.

Clinical codes have been developed for hospital level care for patients with “ongoing symptomatic COVID-19” and “Post COVID-19 syndrome”. These codes are currently being rolled out across all medical record IT systems used in primary care.

People with on-going symptomatic COVID-19 are defined as having signs and symptoms of COVID-19 from 4 weeks up to 12 weeks after testing positive.

People with post-COVID-19 syndrome are defined as having signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.

Post-COVID conditions usually present with clusters of symptoms, often overlapping, which can fluctuate, relapse and change over time and can affect any system in the body.

The shorter-term on-going symptoms from COVID-19 and the longer-term clusters of symptoms are separately coded, but both are considered long COVID.

Once these codes are in regular use, over time Manatū Hauora the Ministry of Health will be able to track detailed information about the impact of COVID-19, including those groups most vulnerable to its effect.

The Ministry’s Long COVID Expert Advisory Group, chaired by the Chief Allied Health Professions Officer Dr Martin Chadwick, has also endorsed an agreed case definition for post-COVID-19 conditions based on the UK NICE guidance and guidelines for long COVID rehabilitation. The guidelines will be finalised and published in the coming weeks and will support self-care for patients, whānau and carers as well as helping clinicians in diagnosing long COVID and managing the condition for patients.

An important message for people with COVID-19 is to allow yourself time to recover as that may help reduce the chances of further symptoms of long COVID, Dr Chadwick says.

“The vast majority of people who test positive for COVID-19 will recover within weeks and return to normal health. But for a small group of people symptoms will persist and have a lasting effect on their health,” Dr Chadwick says.

“Because COVID-19 is relatively new, there remains much we do not know about its long-term effects. Although it is difficult to precisely predict the likely burden of long COVID in New Zealand, given the large number of people who have had COVID-19 in Aotearoa New Zealand, it is likely to result in impacts on individuals, families and whānau quality of life and wellbeing, and the healthcare system over time.”

For New Zealanders' health, it’s important we build on the information we are gathering now, to ensure the support being provided to people with long COVID is informed by the latest evidence.”

New evidence around long COVID continues to emerge from around the world and we are continuing to watch developments closely. As noted by the World Health Organization, even people who were not hospitalised and who had mild illness can experience persistent, fluctuating or relapsing symptoms and some patients develop medical complications that may have lasting health effects.

There are also ongoing conversations between the Ministry and its counterparts in other countries, including Australia, Italy, Canada, and United Kingdom, about using new methods for supporting people with long COVID, including digital tools for self-care.

“We continue to look for innovative ways for supporting people that continue to have ongoing effects from COVID-19.”

The statement goes on to list the symptoms of Long Covid and the members of the LC Expert Advisory Group.
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Ravn · Sep 7, 2022

RoseE said: ↑

Not sure if this has been posted...
https://www.health.govt.nz/news-media/news-items/long-covid-be-tracked-help-new-coding
[...]The statement goes on to list the symptoms of Long Covid and the members of the LC Expert Advisory Group.
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Long list of symptoms. No mention of PEM. Not even something vague like 'difficulty exercising'. Words fail me

I recognise only a few names on the expert advisory group list. At least some of them fully understand PEM. Others, I suspect, are pushing back hard against any link to anything ME-related. I wonder what discussions have been going on behind the scenes?

Sean · Sep 9, 2022

'difficulty exercising'
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Maybe 'exercise' has a specific meaning in medicine, like malaise does. But the use of exercise instead of activity is an issue for me.

Any and all activity, including basal metabolism, is a problem for us. Inability to exercise is just a subset of that problem

RoseE · Sep 8, 2022

Radio NZ reporting tonight...
https://www.rnz.co.nz/news/world/47...ces-to-study-leading-theory-behind-long-covid

Top scientists from leading academic centres in the US are banding together to answer a key question about the root cause of Long Covid - whether fragments of the coronavirus persist in the tissues of some individuals.

The effort, known as the Long Covid Research Initiative, aims to streamline research and quickly pivot to clinical trials of potential treatments. By sharing diverse skill sets and resources, the group hopes to uncover the scientific underpinnings of the disease and use that to design evidence-based trials.

Long Covid is a complex, poorly understood, disabling condition that can last for many months after an initial Covid-19 infection, leaving many of its sufferers unable to work. It affects nearly one in five American adults who have had Covid-19, according to the US Centers for Disease Control and Prevention.

The initiative is backed by an initial US$15 million ($25 million) from Balvi, a scientific investment fund formed by Vitalik Buterin, co-founder of the blockchain platform Ethereum.

It includes scientists from Harvard University, Stanford University, the University of California, San Francisco, Yale University and the J Craig Venter Institute.

"The first thing you need to understand in Long Covid is if patients still have the virus in them or not," said Dr Amy Proal of the nonprofit PolyBio Research Foundation, an expert in infection-associated chronic disease who will serve as chief scientific officer of the initiative.

Currently, there are no proven treatments for Long Covid, which affects more than 150 million people globally.

A growing body of evidence points to the presence of virus in tissues that continue to provoke a response from the immune system, she said.

That may help explain the cascade of some 200 symptoms associated with Long Covid, including pain, fever, headaches, cognitive impairment, shortness of breath and exhaustion after minimal amounts of activity.

Researchers will use advanced imaging and gene-sequencing techniques looking for evidence of the virus in tissues and analysing its affects on the immune system.

If viral persistence is proven to cause Long Covid, the research initiative aims to test antiviral treatments, such as Pfizer Inc's Paxlovid as well as other types of drugs that modulate the immune system.

"Antivirals are our top clinical trials target," Proal said, adding the group would like to study Paxlovid. She could not say whether Pfizer is working with the group.

Some case studies have shown Paxlovid improved symptoms in a handful of Long Covid patients. But large, well-designed trials are needed to prove the treatments help and identify which patients are most likely to benefit.

A Pfizer spokesman said the company is "actively exploring" potential collaborative studies, but would not elaborate.

The initiative was organised by a group of Long Covid patients with backgrounds in finance, start-ups and technology, who are leading the fundraising efforts, such as the initial $15 million grant, as well as others yet to be disclosed, said Henry Scott-Green, one of the organisers.

The goal is to accelerate research by cutting across institutional silos and breaking down funding bottlenecks.
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It doesn't sound like they are looking at ME/CFS research or collaborating with??

This post has been copied to the thread about this research: 'Long Covid Research Initiative' and Polybio funded to research viral persistence and antiviral treatments

Sly Saint · Sep 9, 2022

ME/CFS reclassification petition to be read in Parliament - ANZMES

Friday, 9 September, 2022 - 15:09

Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) petition to reclassify ME/CFS as a disability will be read in Parliament, 2pm Tuesday 13th September.

ME/CFS is a debilitating, disabling condition. People who have this illness often miss out on many parts of life - and regretfully that leaves ANZMES representation notably absent from the upcoming reading in Parliament. The condition is characterised by post exertional malaise, where symptoms worsen after periods of even ordinary activities and ANZMES work is often done from home and sometimes even bed.

People with this debilitating condition face barriers to support under the chronic illness classification resulting in poor quality of life and health inequity. For the very severe, inadequate care can result in hospitalisation and even death.

ANZMES believes the current classification and system is difficult to navigate. There are complicated assessment processes and policies. There is disparity between regions causing access inequality.

ANZMES President, Fiona Charlton, says, "people with ME deserve fair and equal access to healthcare and support. There is currently inconsistency when it comes to deciding who is eligible for care and who is not, across New Zealand."
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full post here
http://www.voxy.co.nz/health/5/406995

Sly Saint · Sep 9, 2022

Charity dinner to raise money for ME

Val Lott’s desire to organise another charity dinner for Rest Assured Respite Trust (RART) comes from her own suffering of fibromyalgia, painful arthritis, and from meeting and forming a close friendship with the Trust chair, Wendy Mathews.

Wendy has been bed-bound for many years suffering with Chronic Fatigue Syndrome/ME.

“Despite Wendy’s poor health, I’ve never ceased to be amazed at her incredible resilience to push through helping others with CFS/ME,” Val says.

The ultimate aim of the trust is to provide a respite centre.
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https://www.times.co.nz/news/charity-dinner-to-raise-money-for-me/

RoseE · Sep 11, 2022

Sly Saint said: ↑

ME/CFS reclassification petition to be read in Parliament - ANZMES
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Due to HRH the Queen's passing, the petition will not be read on Tuesday, as there are legislative changes to be dealt with and then parliament will close until after the State funeral. It's not likely to be read until the second or third time they meet after that. ANZMES will be advised of the date in due course.

SNT Gatchaman · Sep 15, 2022

The Clinical rehabilitation guideline for people with long COVID (coronavirus disease) in Aotearoa New Zealand has been published.

Edit: It's not great.

Sean · Sep 15, 2022

Just had a quick look. A mixed bag. Still basically operating on the rehabilitation model, far as I can tell, despite there being no real evidence of its benefits for LC yet.

Ravn · Sep 16, 2022

SNT Gatchaman said: ↑

The Clinical rehabilitation guideline for people with long COVID (coronavirus disease) in Aotearoa New Zealand has been published.

Edit: It's not great.
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Only had a quick skim: mixed bag. Looks like different sections were written by different people without any communication between them.

In one section you have this (my bolding)

Post exercise malaise (PEM) - When symptoms can get worse, or individuals get very tired even after a small amount of activity

Post exertional symptom exacerbation (PESE) - Tiredness that can last for more than 24 hours after physical or mental effort
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In a different section you have this (my bolding)

The condition can be triggered by cognitive, physical, mental, or emotional reasons, with onset immediately or 24-72 hours post exertion [...] Information for Post exercise malaise (PEM), or post exertional symptom exacerbation (PESE) which is different from fatigue, information can be found here
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If anyone has the energy, at the end of the guide there's a call for feedback. You may also wish to suggest employing a proofreader.

As the science and literature continues to evolve our understanding on long COVID conditions feedback is welcomed and updates to the information contained in the guideline.
Please email your feedback and or new information to: Office of the Chief Clinical Officers...
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ukxmrv · Sep 16, 2022

There is some comedy gold there though

"Psychologist Psychologists are scientist practitioners who apply psychological
knowledge, principles, methods and procedures to predict and influence
behaviour and/or cognition to support people to achieve psychological
and psychosocial wellbeing. Psychologists provide evidence-based
psychological therapies to optimise wellbeing."

and delusions of grandeur

"Occupational therapist Occupational therapists engage people and whānau in personally
meaningful occupations (self-care, productivity, leisure) to empower
them through rehabilitation that will optimise their recovery."

Ravn · Sep 17, 2022

Opinion piece by Prof Tate about the petition.

I believe the presentation of the petition to Parliament mentioned in the article has been delayed until sometime after the royal funeral.

As sufferers and supporters of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome present a petition to Parliament asking to reclassify the condition from a chronic illness to a disability, Warren Tate explains why this needs to happen now - especially given the effects of Long Covid.

Comment: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating and, for most of those affected, lifelong disease that does not allow them to be in employment or participate in community activities other than in a very restricted manner.

The Ministry of Health Disability survey of 2013 defined disability as “any self-perceived limitation in activity resulting from a long-term condition or health problem lasting or expected to last six months or more and not completely eliminated by an assistive device”. ME/CFS certainly fits that definition.

A chronic condition by contrast is persistent and long-lasting in its effects or a disease that comes on with time, and includes diseases like diabetes, cancer, arthritis, asthma. These diseases are not necessarily through their course limiting for employment or community participation like ME/CFS.
...
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https://www.newsroom.co.nz/health--science/why-we-must-make-this-chronic-condition-a-disability

RoseE · Sep 17, 2022

Ravn said: ↑

I believe the presentation of the petition to Parliament mentioned in the article has been delayed until sometime after the royal funeral.
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It is to be read on 20th Sep now.
From an ANZMES rep...
"... it will be read on 20th and all media that day will be funeral coverage. We're not attending like we were going to, we'll rerelease our press release but not make a big fuss on 20th as a lot of our media contacts are in UK, and those here are also covering funeral... we're arranging stories/interviews/photo ops for a couple weeks time, it will get better coverage and there's still a story in couple weeks because our written submission to the committee isn't due until 7th Oct..."

ukxmrv · Sep 17, 2022

I am curious to find out what is the difference in NZ between a disability and a long term condition. I've been hunting and reading but don't quite get it.

Has any one found an easy link that they can post please?

In particular I would like to know when this happened, is it covered by acts of parliament or statutes, and what is the rationale really behind having these differences?

Would be grateful for any pointers. Read the ANZMES and all the obvious stuff but there is a gap of assumed knowledge that I lack.

Hutan · Sep 20, 2022

There's been a bit of coverage around the presentation of the petition.

ME/CFS was discussed yesterday in a sympathetic way on the early evening show of Radio New Zealand, The Panel - at the 9.15 minute mark to the 20 minute mark:
https://www.rnz.co.nz/national/prog...l-with-mark-sainsbury-and-amy-carter-part-two
The patient, Simone, was good. The main guest, Kate Waterworth(sp?) isn't a medical person, her area is disability studies. She seemed very sensible and sympathetic. She alludes to the fact that what ANZMES has asked for with their petition is not at all clear, and suggests that what they were really asking for is more support for people with ME/CFS. She addresses @ukxmrv's question - which doesn't have a particularly easy answer - towards the end of the segment.

It was also discussed on the Radio New Zealand Afternoon programme today. I'll add a link when it comes up. It featured an interview with Professor Warren Tate, with a presenter who acknowledged the debilitating nature of the illness and mentioned that she knows people with the illness.

Radio New Zealand has been consistently supportive and fairly well informed for at least the last couple of years.

Ravn · Sep 20, 2022

Hutan said: ↑

It was also discussed on the Radio New Zealand Afternoon programme today. I'll add a link when it comes up. It featured an interview with Professor Warren Tate, with a presenter who acknowledged the debilitating nature of the illness and mentioned that she knows people with the illness.
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https://www.rnz.co.nz/national/prog...g-chronic-fatigue-recognised-as-an-disability

Ravn · Sep 21, 2022

More coverage on the petition from RNZ, article plus a video interview with ANZMES president Fiona Charlton.

The article has been taken up by at least one of the major regional newspapers.

https://www.rnz.co.nz/national/prog...ds-strain-to-chronic-fatigue-support-services

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